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Sunday, January 29, 2017

As I lie in this bed, watching the
days slip by year after year, I yearn for any potential break in the
endless monotony. Even the simplest of activity can mean so much:
mornings when I feel well enough to either watch a movie, color, draw or
do something else creative; my short excursions to lie in other rooms
for a different view; the rare but wonderful times when I am able to
have a visitor for a few minutes or briefly sit outside and see the
bright blue sky above me. I live for those moments; for those tiny but
glorious escapes from what is otherwise inescapable.It's a strange thing to be so
confined, not just in terms of your surroundings, but also in terms of
your very nature; of the freedom to live and experience life as the
person you once were and still are, but can no longer fully be. I've always been a bit of an adventurer. I love to travel and experience new things. I am restless and, in my healthy days, I thrived on change. Ironically, I am somewhat claustrophobic and hate being in small, confined spaces.
I am a loyal friend and feel a great need to help others, to give back
and to do my best in order to make a difference in the world. I am also
an over-achiever, often determined to a fault. I once finished a
college project in one week, only to learn -- upon turning it in to my
bewildered professor -- that it was supposed to take me the entire
semester to complete. Today, my biggest achievements are
often such simplistic things as managing to partially wash my hair, to
speak more than a few words at a time as I attempt to interact with a
loved one, or to make it across a room and down the hallway in my
wheelchair. And yet, these are not small accomplishments
for me. In many ways, I push harder now to do even the most meager
task of daily living than I ever did to accomplish greater feats when
healthy. However, even after all this time, the fact that such minor
undertakings can now qualify as great achievements is a reality that is
difficult to process. It stands in such stark contrast to who I once
was, and to the person I could have been had I not been felled by
illness all those many years ago.
Given
such limitations, it is understandable that I sometimes struggle with
finding a sense of purpose or meaning to this existence. Whenever I
start to doubt my ability to give back
to the world, I remind myself that even the smallest of actions, spread over time, can leave noteworthy footprints. While
I may not be able to bond or spend much quality time with loved ones, I
can still occasionally send them cards, notes and special gifts to let
them know how much they mean to me and that I am always thinking of
them. While I can no longer volunteer
at charities that are important to me, I can still donate small
amounts of my limited income to help them in their efforts to raise
funds. Even though I can't attend
marches to advocate for more
research for the very disease from which I suffer, I and the millions
like me can still unite from our beds through blogs, social media and
other means.
I often think of patients who are sicker and even more confined than I am. There's a young man named Whitney Dafoe
who has a very severe form of this disease. With the exception of
hospital visits, he has been unable to leave his room in over three
years. He lives in total darkness and silence, unable to speak, eat or
tolerate any kind of interaction with the people he loves. Yet, despite
being completely shut out from the outside world in every possible way,
Whitney has still made an enormous impact by merely allowing others to
tell his story. On my worst days, when I, too, can
do nothing but lie in darkness and stillness, I inevitably think of
Whitney and marvel at his bravery in finding the strength to endure. If
he can get through this every single day, I tell myself, then I can do
it too. And thus, without even knowing I exist, he helps me and so many
others in ways he may never fully realize.Indeed, it is because of Whitney and his father (a world-renowned genetic scientist) that the first comprehensive study
ever done on severe myalgic encephalomyelitis (ME) is now being
conducted, providing much needed hope to all who suffer from the
disease. And that is pretty extraordinary.
It is a beautiful reminder to never doubt the power of any individual's
life to change the world, no matter how limited that life may be.I read (or listened to) a book this
past year called The High Mountains of Portugal by Yann Martel. In one
section of the story, a man who is grieving over the loss of his wife
makes the unusual choice to buy a chimpanzee (named Odo) and take him on
a journey with him. He becomes very attached to this chimp, and their
relationship affects him deeply:

"While Odo has mastered the simple
human trick of making porridge, Peter had learned the difficult animal
skill of doing nothing. He’s learned to unshackle himself from the race
of time and contemplate time itself. As far as he can tell, that’s what
Odo spends most of his time doing: being in time, like one sits by a
river, watching the water go by. It’s a lesson hard learned, just to
sit there and be.”

Indeed it is. It is a constant
struggle to not want to do more and be more, particularly when so much
of everyday life remains firmly out of reach. I must often remind
myself that, despite how contrary my accomplishments are to my desires,
they are still noteworthy. Rising above extreme adversity on a daily
basis is no small matter. Those with ME experience a kind of
all-encompassing loss that most people don't face until they are at the
very end of their lives:
health, career, social life, independence and the basic ability to even
care for oneself. At its worse, some ME patients (as I have) lose the
ability to walk and fully speak, while others can even lose the ability
to eat. And yet, somehow, despite it all, we not only endure, but
manage to find hope and joy in what remains. And that, truly, is a
remarkable achievement. In the end, the value of your impact on the world is not measured by
its scope. If you've touched even one life, if you have loved even one
person, if you are kind to others and are doing the best you can with
what you have, then you are making a difference. To exist in and of
itself is to have purpose. To breathe, to be fully present in each
moment, to show love and compassion in whatever small way you can – this
is what gives our lives meaning. And this is why I no longer doubtthat my life, and every life, has infinite value.And so, as we all do, I learn to persevere and make the best of what is. I find my purpose in what little things I can do, and try to see the quiet beauty that still surrounds me as I slowly learn to “sit and be.”

A bird watches the sunset on a saguaro

I long to accomplish a great and
noble task, but it is my chief duty to accomplish small tasks as if they
were great and noble. – Helen Keller

Not all of us can do great things. But we can do small things with great love. -- Mother Theresa

To know even one life has breathed easier because you have lived. This is to have succeeded. – Ralph Waldo Emerson How rare and beautiful it is to even exist. – From the song "Saturn" by Sleeping at Last